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kristina38

almost a year of caregiving

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Hi all, it will be one year on June 29th that Mom came home from acute/rehab hospital. I've been caring for her solely for that entire time with no breaks to speak of. It seems like every time I think we are making progress and I am gaining some of my life back we take three steps backwards. I had started back to work a few weeks ago but now it looks like I may have to give it up because I'm not available for the hours they need me to work. It wouldn't be so bad but our financial situation is nearing crisis, Mom only has 5,000 dollars in savings left and I simply cannot afford to be unemployed any longer. We were also planning a trip back home to St. Louis the end of July but because of the ridiculous cost of home care for Mom (300 dollars a day for 24 hour care which she needs) it appears that I will have to stay behind to care for Mom. To be honest, I really, really needed this break and I'm just crushed that I can't go. I haven't seen any of my friends or my fiance's family in 1 1/2 years now and I'm really beginning to become mean, angry and resentful most of the time.

 

My Uncle's behavior is getting worse and he takes every opportunity to talk bad about my fiance to my Mother. Some days I'm truly fearful I'll lose control and hurt him badly or worse. He told me the other day I wouldn't have so many problems if I hadn't gotten the bottom of the barrel when I picked my fiance. Considering my fiance moved 800 miles away from his family and friends to work two jobs in a redneck shithole town to help me pay MY bills I don't see it that way. He constantly harangues me about my ex boyfriend who was very wealthy and tells me I should have stayed with him (I left him almost five years ago). I explained to him that had I still been with my ex he would have never allowed me to move to Florida to care for Mom and HIS ass would have been out in the street by now, he doesn't seem to get that though...I hate the idea of throwing an old man out in the street (he's 75) but he causes me nothing but undue stress when I'm already stressed to the max. He's always been a very spiteful, mean spirited person and he still is. The rest of our family will have nothing to do with him including his own son so it appears I'm stuck with him. I really wish I had an answer but I don't and some days I wish I just wouldn't wake up...

Kristina

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Sweetness and light only goes so far in resolving our problems. Do you have a family counselling service in your area? You need someone to come in and straighten your uncle out. You, your fiance , mom and uncle are a "family" and he needs to be able to see it that way.

 

Yes, $300 a day is very expensive but three days away would be worth it's weight in gold, more if you can afford it. What would be the cost of a week in respite care as opposed to the in-home care?

 

Try a different tack with your new boss, explain the difficulties of your hours and ask how you could increase your working hours in the time you are available (worked for a friend of mine with a husband with cancer).

 

I have long admired you and your fiance for picking your lives up and transferring to a difficult situation to look after your mom. I am sure both of you have some new admirers where you are now. Maybe someone from among them can relieve some of the stress you are feeling now. My help has often come from unexpected sources so ask your new acquaintances about help from churches and service clubs and see if you can find a volunteer to sit with your Mum for an hour occassionally so you can slip away and have a coffee.

 

As for your uncle and the ex-boyfriend we use the phrase:"THat's in the past. Get over it."

 

Sue.

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Hi Kristina,

 

Sue had some excellent advice. It sounds as though you are overwhelmed - and for good reason since you've had your share of stress.

 

Sometimes it helps to break our needs down one by one in order to prioritize. I know your emotional need to care for your mom - however, if you get sick (physically or emotionally) you can't be much help to her.

 

I'm sorry that I don't know your uncle's situation but it sounds as though you are also his caregiver. If he has medicare/medicaid it may be time for you to address his psychiatric status with his doctor. It isn't rational for someone who is being cared for by another to abuse them verbally the way he seems to. His complaining is abuse, not just a personality defect. If he doesn't live with you then I don't think you have to open yourself to his behavior at all. If you are upset it is more difficult for you to care for your mom, whether you realize it or not.

 

By all means, now is the time to contact Social Services. I think of it this way. If I hire 24 hour caregivers I hire at least 2 and possibly 3 people. I am one. How can I possibly think I can be on call 24 hours a day? For year with no time off? I've been there. Although it was difficult, my husband spent a month in a rehab/nursing facility. He didn't get the care I give him. But I got the rest I needed in order to bring him home so I can care for him. Social Services can help you make decisions on behalf of both your uncle and your mom in order for you to regain your strength.

 

I'm sure you've thought about everything I've said before. It's OK....I needed to hear that. It didn't make me a bad person, nor does it make you a bad person to need a time for yourself. You are regathering your strength to carry on. It would probably be very wise for you to make plans to go on your vacation in July and to work around it through the many avenues available.

 

Please take care,

 

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Hi Kritina,

 

I'm going to somewhat disagree with the others here on the status of your uncle living with you and your mom. You say he's always been "a very spiteful, mean spirited person" and I don't see any amount of therapy or a psychiatric evaluation changing that in a 75 year old man. He's got it in his head that your x-boyfriend would have bought you a better life style and that recording isn't going to quit playing in his head. Therapy for yourself, however, probably would help you deal with the stress of your living situation and help you to sort out what your options are for a more permanent solution for caring for your mom. You have an obligation to see that your mom gets the care she needs, but that doesn't extend to your uncle.

 

Have you checked the local nursing homes to see if they do weekend respite care? I don't know what they charage compared to the 24/7 in home nursing care but it's worth a phone call to find out. It sounds like you really need the break at any cost.

 

Jean

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Thanks guys and gals for your replies...I've checked into nursing homes and assisted living and none of them in our area do short term, two weeks seems to be the minimum stay they will even consider...I do have one last option, a lady at work who cared for her Mom until she passed away has volunteered to stay for a couple of days and we are trying to see if Mom's ex nurse from home health care (also a customer at my work) can pick up the other couple days. I have my fingers crossed that we can maybe come up with something so I can still go but I also need to make plane reservations soon to get the 30 day advance discount on tickets. I'm pretty sure these two ladies will do it for much less than 300 dollars a day considering the one knows Mom and all she's been through and I consider her almost a "friend'...

I spoke with my boss yesterday to find out if I am getting any shifts this week but she didn't know yet as she's been out sick all week...She is trying to work something out to get me some shifts but it's up in the air still. My fiance just started a part time job on the weekends as well so we seem to have the finances under control for the moment. We also have a law suit pending against the hospital here that gave her all the wounds, marsa, pneumonia etc. They've been stalling my lawyer for almost a full year now but we've sent a letter of demand (certified) so they now only have til the beginning of July to reply without really, really looking bad if we have to go to court. I've never been involved in a law suit before but I've heard the fact they are stalling like this is probably GOOD news and they are just trying to put off the inevitable of paying us.

My uncle does live here in Mom's house, my Dad allowed him to move in about 6 years ago before he died. The "deal" he was given according to my uncle is he pays 300 dollars month by buying groceries. Of course since I've been here he might have spent 150-200 on a good month and he eats all day every day and without a doubt more than any other person living here. My uncle is a racist, pure and simple and that is his main problem with my fiance (he's black). The first several months we were here we had several fights about his free use of the "N" word while he was watching tv (he talks to the tv or should i say SCREAMS at it) My fiance confronted him as did I. He's since stopped using the term but he's still a royal pain in my ass. He's also very nosy, constantly in our business and we get ZERO privacy, which can take a toll on any relationship. We got into an argument the other day and he had the nerve to argue with me about his "right" to live here. He told me he had my Dad sign something or other, I told him "Dad's been dead for nearly four years good luck with that in court" LOL I know this sounds awful but he has health problems and although he blames it on acid reflux, gastritis, diverticulitis etc. I know his heart is in bad shape, so really it's just a matter of time because if he ends up in the hospital and needing a caregiver afterwards his ass is going to a nursing home with a quickness LOL

 

I really appreciate the people on this board and sometimes I just need to vent a little, just writing down my feelings and thoughts yesterday felt like a huge burden had been lifted...I am considering looking into therapy for myself if I can find one that isn't cost prohibitive (I have no health insurance since I'm not working fulltime anymore)....

Kristina

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[/size] -Kristina -

 

I do agree with Jean. No amount of counseling will probably help your uncle. My thought was that it may be time for him to go to another place to be cared for, and the doctor's evaluation may assist with that. You are not "stuck with him". You need to be in control of your own situation, your own life. You can't control him, but you can take care of yourself.

 

Also, Jean is correct in your need to check out respite care for your mom. One way you may go about is by contacting the Social Services department where you are in order to get some assistance.

 

Yours is not an easy situation. I've found with myself though that others may have an idea I've not been able to think of when I'm in a crisis.

 

Hopefully all the thoughts here will be helpful to you!

 

Warmly,

[/font]

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Thanks Anne, I'm going to look into Social Services, I contacted the Counsel on Aging here but their "respite" system is more of a volunteer type thing for a few hours now and then and most of the volunteers are retired people that couldn't do the lifting involved with Mom's transfers anyway. Mom is able to help with her transfers and she's getting stronger all the time but at this point in time she can't do it alone. Poor Mom, she tends to get caught in the middle of the bickering around here as my Uncle likes to sneak into her room and talk trash to her about my fiance (he's not bright enough to realize, if I can hear her over the baby moniter, I can also hear HIM LOL He's a passive aggressive so his behavior is pretty predictable, he'll make little comments trying to "tell" on my fiance for going out while I'm at work (he cares for Mom while I work). He's basically been trying to break us up since we got here, what I don't understand is, if he were to succeed and Orlando left, I'd have no choice but to put Mom in a nursing home, let the state take her house and HE'D be in the street to. Some people just seem to want to bite off their nose to spite their face LOL..

Kristina

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LOL Pam, I think the family has a laundry list of reasons they don't deal with him. He bilked my grandparents out of their house is the main one but he's done so much shady crap it's hard to single one thing out. He sponged off my grandmother until she died and even had the nerve to "sneak" and move in with her in her retirement apartment that was paid for by SS. My aunt (mom's sister) finally pulled the plug on that and told my Grandmother she wouldn't fill out the paperwork and lie for them any longer so he had to move his ass out. Ultimately I know I have the authority to boot him out but I also know the last thing Mom needs is some big upheaval right now so I try to check him now and then. He's back to being on good behavior right now after our fight this past week, we'll see how long that lasts LOL...

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To Kristina from panama city,

Hi, was reading your posts and noticed (if i read correctly)you said respite care for your mom would cost $300. I know that to pay for a nurse aid costs around $20 an hour, but I dont think the whole day rate should necessarily be that expensive. AARP did a report where the average cost was reported to be $180 for inpatient respite. I know some might be more, but some might be cheaper as well. When I was trying to get hubby in SNF I went to check out a bunch of that and the lady who showed me the one property said their fee was $80 a day. Granted the place was a little run down, but it was pretty secure looking and the residents seemed to be ok. It dont have to be a 5 star place when you need a few days break, as long as its safe and they're taken care of.

 

Good luck with your Uncle, I dont know what to tell you. Hubby's mom is royal pain in butt too. Theres the fact that they (his family)too are all racist, ignorant and basically unwilling to see any side other than their own. I am white, but it offends me when I hear the N word being used. It offends hubby as well, but its hard for him to say anything to them about it. What really bothers me is that they cannot get it through their heads that he cant talk to them like he used too. Having asphasia, its so difficult for him to get those words out on the phone. When he talks to someone he needs them to be less than 5 feet away and facing him. Otherwise, its next to impossible for him to get those words out. At first they accused me of withholding phone calls from him, then they swear that I have "turned him against them" , I even had a visit from the police because she called them because she couldnt get through and find out what was going on with him. When I called her up to let her know yes he was alive, he loves them, but didnt want to talk she chewed him out over the phone leaving him in tears. He wanted to go to KY to see them and when I booked the plane, they turned around and said I was going to have to come with to take care of them as she couldnt afford to take time off work. Mind you when she was here with her daughter, sister and neice she was ready to drop $600 bucks for his air ticket, but with me paying the ticket she couldnt take off a week (where she makes less than 400 a week). They just dont want to take care of him, which is just as well, because the way they yell and carry on over there his blood pressure would be skyrocketed. Phew! I better stop now, I'm getting on a roll..lol

 

If I could recommend something it would be this. Get someone else like her doctor/nurse or someone he has more respect for because he obviously doesnt care for you. Sit down with him and explain that all though he is entitled to his own opinion, it is inappropriate to bothering your mother the way he is. I imagine she's probably dying with all of this going on. Your uncle sounds a very insecure person, it sounds like he's trying to form an allie with your mom and needs to be felt like he's important. Theres two ways to be a big man. You can build yourself up or tear everyone down around you. nobody respects the person who tears everyone down...its like the child who is jealous that anothers blocks are higher than his. I think your uncle really does need some counseling for everyones peace. From what your post was(including law breaking) it seems like he's definately showing some sociopathic tendencies that need to be addressed. Let him know how important he is to you (even if he's not, but just to keep the peace).

As far as your boyfriend goes (who's gotta be a saint for staying in a house after he's been called N) you should play up all the good things he does as much as possible. Keep showing that you'll pay attention when some is acting good. Kinda like with kids...you gotta catch them being good and not give attention to them ONLY when they're being bad. I've know some individuals who acted like Arses because that was the only way they could get attention. You know how it is..better bad attention than no attention at all. Dang I'm on a rant again...LOL

 

 

 

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Hi Red, and welcome to the board. As you can see we tend to use this place as a venting outlet because most everyone here has been there and done that at some point in time. I could write a psychiatry thesis on my Uncle alone LMAO...You hit the nail on the head, he has a great need for attention and is very insecure. I try to "include" him in family things but I can't always listen to his 24/7 whining about this and that ailment as he'd like me to. My main mission in life is seeing to Mom and her VERY REAL ailments and conditions. Even before Mom's stroke she would email me and tell me how she can never have any ailment or ache and pain without him trying to "one up" her with something. I had food poisoning right after I moved here and within three days he claimed he had all the same symptoms I did, even though he didn't eat the same food that gave me the poisoning LOL...He's on good behavior still and has been just a grocery shopping fool the past week, I guess he knows I was on my last straw with him, this will last a few weeks before he gets to feeling "unimportant" again...I checked into all the assisted living places in the phone book here and none would do a short term stay for less than two weeks. This town is pretty backwards so it's not surprising. The company we looked into to care for her at home is called "home instead" and their daily rate and nightly rate differ and the combined total for a 24 hour stay came to 275 dollars. I think it's outrageous personally considering they would be working for all of 7 hours a day or so. Mom sleeps still about 16-17 hours a day with her nighttime sleep and napping. The main problem is her inability to get on the toilet by herself or I wouldn't really need anyone at night at all. I'm still hopeful my two "friends" can cover it for me for a few days but I really need to make my plane reservations soon so I have my fingers crossed. I'm working tonight, so I'll probably speak with them then and hopefully and get a definitive answer, thanks for your reply and good luck with your monster in law LOL

Kristina

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Just an offer the wall suggestion, but have you tried surrounding towns? Even if you have to drive her an hour or two..if you get a place for like 150 bucks that'll pay for itself in gas. That is just an exorbatant rate. For that amount of money you could also hire someone just to sit with her for like $100 and pay for a nurse to visit two hours or so to do all the heavy work like bathing her, make sure shes ok(maybe 60-80 bucks)....but then I dont know of your situation..my hubby is ok with bladder its just that he needs diaper changed when he poops which is usually less than twice a day. But i wouldnt feel right leaving him unattended during the night either, just dont know if anything could happen and he needs help figuring out what to do...he's kinda child like in that way...his ability to figure things out was damaged

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I spoke with my friend, mom's ex HH nurse last night at work and she is still waiting to hear back from a girl that does caregiving that may be able to do that long weekend. I'm hoping she can but it gets frustrating waiting for people to call when time is running out on my airline ticket reservations. I've also thought about maybe hiring the home instead company for a day shift and just having my friend spend the night in case Mom needs the toilet, that way they wouldn't be trapped here for 4 days 24 hours a day. I have my fingers crossed we'll figure something out. I'm also supposed to find out some kind of answer about our law suit against the hospital the first week in July so if they decide to go ahead and settle the money will be a non-issue and I can just hire the Home Instead people even though I feel their rates are absolutely ridiculous. At this point I just need a break and if we can afford it I'll pay LOL

Kristina

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Oh Kristina,

 

If it helps, I SOOO feel for you! I haven't been in your situiation for quite as long, mine started

last January 6th. I left my home in Montana to come back to New Jersey.. where I HATE it...

but I suppose when "life happens," we do what we have to do.

 

I was having the GREATEST time back in Montana. Both my husband and I were having the most

WONDERFUL time of our lives. Then shortly after Christmas, I got news that this had happened. I hadn't

even finished Christmas! So for me, Christmas was never over. I still to this day am listening to

Christmas music! HONEST! I decorated for Christmas, has the most unbelievably happy Christmas,

and then in the middle of it all, during the first week of January, I was on a flight back to Jersey. Thinking

a stroke was LESS than a heart attack, I was expecting I'd be back in 3 weeks.. TOPS. Boy was I way off!

 

Never even packed clothes for summer! I brought three pair of winter pants and 5 winter shirts. And that was IT! Here I am in August and seeing no end in sight! Likely I'll be here for the better part of the year...

AT LEAST!

 

For the longest time I was SOOOOOOOOOO angry with my mom. I hated being back here, and I hated everything about living in Jersey. I hated having my life disrupted, I really did. All I could think about was how wonderful Christmas was, and WHY am I even back here????? Winter came and left, spring came and left, and then here it is summer. And here I am! In the middle of a HEAT WAVE! Oh, I miss the Montana snow and atmosphere. I so long for the peace and quiet of my OLD life.

 

I used to get so bitter and angry with mom, often not able to carry a conversation with her that went beyond

3 lines as it would turn into a debate. But I realized it was ME that was in the wrong, and I had to do some really deep soul searching. I managed to get over it, and I am so much more relieved I still miss my life back in Montana, and I hope to see the mountains again, but I dunno when that will be...

 

New Jersey snow is UGLY. Montana snow is BEAUTIFUL. So sparkly and clean! Oh, and the weather... it's great! NO HUMIDITY at all!

 

Kristina, long story short... if it's not too late for it.. read on line about anger and self discipline. Trust me things will get better. See your mom's point of view and what she's going thru. I so want to get away for so many times, but tickets to montana are not cheap.. AT ALL. My husband did relocate to come back here with me.

 

I don't know if I answered YOUR questions or not, but I hope my story can help you in some way! Good luck to you. It'll all work out!

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Kris -

Jeab has given you good advise - your responsibility is to your mom, not your uncle, and once you get extra help to lessen your load, you'll feel better and be able to deal with all this -

Sice your uncle is in the picture, could he live somewhere else on his own? Its time, you remove him from the picture in a loving, but firm way for your survival

June

GOOD LUCK & don't let your uncle take advantage of you :blush:

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Hi all, sorry it's been so long since I've posted but I've been super busy these past couple months. We did manage to go on our mini-vacation the end of July. A customer at my work that works at the hospital offered to do it for 300 dollars for the entire four days. She took paid leave for two days and had the weekend off so she made it pretty well and we saved alot of money. She did a good job considering we were in the process of taking Mom off her Paxil. I ended up having to put her back on the Paxil a couple days after I got back because she just got too mean, sad, and hateful off the drug. She's doing very well now although she still is aphasic and can't walk. She does try to practice her walking more now and seems to be in the process of hitting another round of motivation.

 

My Uncle is having open heart surgery today (his symptoms finally came to a head and he couldn't deny the problem any longer). He spent all of last week in the hospital and I have to say it was a VERY stress free, quiet week without him. I've realized alot of the stress and anger I have is directly related to HIM not Mom at all. The hospital sent him home for the holiday weekend and within hours of his getting home I was already angry, frazzled, and wanting to walk out. This in turn rubbed off on Mom which then rubbed off on my fiance when he got home from his ten hour day and everyone but my Uncle was *beep* off by dinner time. He is back in the hospital today for his heart valve replacement operation and I know this sounds mean but I'm so glad he's in the hospital! I should have at least a week of peace and quiet and I am going to ask the hospital when they prepare to discharge him how much care he is going to need. If it's extensive he is going to have to go to a rehab or something because I just cannot do it. I have Mom to care for 24/7, I am working about 25-30 hours a week and my fiance is working 50-60 hours a week. ENOUGH IS ENOUGH!!!! That doesn't even touch on the fact that he's a hypochondriac and now with an actual legitimate problem he's going to be completely unbearable and even more useless than he was before.

 

This weekend was a good precursor of what's to come. He moaned, groaned, complained and made a nuisance of himself the entire weekend. He used to at least help clear the dinner dishes, now he just gets up and starts routing around the kitchen for dessert. He said his doctor told him he couldn't stand by the sink and load the dishwasher, funny he could stand by the sink and be in my way while he wrestled with the cake box LOL...I tried to take a nap yesterday before work (I work nights from 6-2am. He went in and out of his room 8 times in the first hour I was laying down, slamming the door each time. Wandered down the hallway talking at the top of his lungs to the CAT!!!! I know I need to get rid of him but I just feel awful throwing an old man out in the street. That doesn't even touch on the mess he's made of his room (dust two inches thick on everything, bed destroyed, carpet destroyed etc) He also has 2/3's of our storage shed full of crap (he's a packrat). The task is daunting considering everything else on my plate but after a week without him it's become so clear what the ACTUAL problem in this household is I don't feel I can ignore it any longer. It was SO nice having privacy once again and feeling like a real PERSON! If he were here right now I would not get to write this without him interuppting me at least 2 or 3 times to complain or whine or just babble about irrelevant *beep* that I don't care about. Anyway I just wanted to update everyone and thank them for their input!

Kristina

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Well you have found the root of the pproblem, before he gets discgarged you nay want to talk to the patient advocate or social worker and work on getting him plaved in a home.. whether it is in a senior building where he has his own space, but someone to help clean and meals are served in a dining room.. This may be better for him as he would have people his own age to socialize with. It is pretty clear that you cannot care for them both plus work also..

 

You need to take care care of yourself and your welfare and taking care of your mom is up there on the priority list.

 

Find out from the social worker and start the paper work applying for financial aid and get him on the list or whatever it takes to get him his own place.

 

Take care

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:hug: Kristina,

 

I ditto what Bonnie said. It seems to me that you already have enough on you plate: :juggle: working, taking care of mom, and a fiance that's working long hours. You have tried to make it work with your uncle, but obviously it's too much of a job. We would all like to keep our loved ones at home, but we can't wear ourselves down in the process. You may have bit off more than you can chew! :2cents:

 

I hope your uncle's surgery goes well, but it's time to make alternate plans for his after hospital stay. Take care and hang in there. :friends:

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Hi all, just an update on us...Mom has had a setback and is in the sicu again. I took her to the emergency last Wed. She had been having a declining appetite for about a week and then started being nauseous and vomiting Tuesday morning. I thought she may have a stomach flu that's been going around here but after the second day she vomited I took her in fearful of dehydration. Turns out she has gallstones and an infected gall bladder. They did surgery yesterday and removed the gall bladder. She did well in surgery considering her pt number was 1.7 when they went in to operate. She has some weak heart valves as well so we were very concerned about the surgery . Her surgeon thankfully is one of the few good doctors around here and he did it in less than an hour. She experienced some breathing problems after surgery so they have her on a vent UGHHHH but started weaning her today and I have my fingers crossed we can get her off of it QUICKLY and get her out of that hospital. For those of you that aren't familiar with my story I have a lawsuit pending against this hospital so being there is very hard for me. They damn near killed my Mom after her stroke and it took me a year to heal the decubitus wounds she got there. I've been so far up their butts this time around they have no choice but to do their jobs and I still found her laying in poop three times last week! I finally made them get her a bedside commode because she had diahrrea with all the fluids they gave her and no food in a couple days. I toileted her myself and she flushed herself out. Of course she wasn't going to do that sitting in the bed! FOOLS I gave her better care by myself without a team of licensed practicing FOOLS lol

My uncle is home from surgery and is doing well. He's been pretty pleasant (pretty sure it's the lortabbs and xanax they have him on) lol

If I'd known xanax would do the trick I'd have crushed them up in his coffee years ago LMAO...

Oh yeah, the stray my uncle brought home in August had her kittens (she was pregnant when we found her). She is just a baby herself maybe five months old but she had SIX healthy beautiful kittens. They are three weeks old now and just beginning to venture out of the dog kennel I have them in. They are going to be a handful especially with all my other responsibilities but at least they provide me some comic relief with their antics lol...

Kristina

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Hi Scooter and thanks! Mom is doing better today, she had her surgery Sunday evening and has been in the SICU since with the vent. They started weaning her yesterday and she did well most of the day but they turned it back on so she could rest last night. We're hoping they will extubate her today and maybe even let her eat tonight or tomorrow if all goes well, but that depends on how well she does breathing on her own today. I wish they would let me stay with her more because I know how to keep her calm which is the main problem. She gets worked up, starts hyperventilating and her heart rate goes berserk, she also has some pain still so that doesn't help. She responded well to me today when I visited with her (they only have four visitation times a day and only a half hour each time) and even nodded her head when I asked her if she was hurting still. The nurse gave her some pain meds and that seemed to help her heart rate. They did have to restrain her good arm because she was trying to yank out the vent tube LOL...She's been a tube yanker since the stroke and I don't blame her, I'd yank that thing out of my throat too LOL...She's even been known to yank out her own catheter YIKES! Well, time to go back up to the hospital, I'll update again later

Kristina

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Just an update. Mom is doing pretty well breathing on her own and she now just has the small nose oxygen unit instead of the mask. They did a swallow test on her this morning and decided to give her one more day before removing the nose feeding tube. She was swallowing pretty well but then had a hard time trying to clear her throat and sounded kind of like she was gurgling not in her lungs but in her throat. She was just extubated yesterday so it's not all that surprising, her throat is probably sore still. I spoke with her surgeon today and he is pleased with her recovery so far as from a surgical standpoint. She's had no incision site bleeding, they removed the drain tube and there's been no bleeding in the liver area where the gallbladder was removed. :) The discharge social worker just called me and wanted to know if I wanted to send her to a nursing facility when she's released but I declined, I'm not just pretty sure, but positive that I can do a better job and she'll recover more quickly here at home with her kittens and dogs and cats where she feels safe and happy. I'll update again later

Kristina

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UPDATE on Mom. Sorry haven't posted but things have taken a turn for the worse and I've been at the hosptial non stop for over a week. She was doing well Friday night but because of the heparin they were giving her to thin her blood back out after surgery she began to bleed internally and her blood pressure took a nose dive. Her HH number was only a 4.5 Saturday morning and they had to put her back on the vent and begin giving her blood. She almost coded on us Saturday and the doctor told me not to go far. They discontinued the heparin and she has slowed the bleeding almost to nothing now but her kidneys have failed as a result of the blood pressure drop and lack of blood in her body Saturday so now they are dialysing her to try and "jump start" her kidneys. She has never had any kidney problems before so the doctor is optomistic that she will only have the dialysis temporarily but I feel like I've been hit by a bus at this point. The bottom line is, I'm just not ready to lose my Mom. She was doing so well before the gall bladder operation and I really, really just want her back home in her bed :(((( The nurse told me her gastroenterologist told her yesterday "Don't worry, she'll make it, she was in here for over a 100 days after her stroke and she pulled through fine, she's a strong, strong lady"...Her surgeon also told me that she is an amazingly strong lady (like I didn't already know that lol) and he would know, he is the doctor that oversaw her wound care for the decubiti that were life threatening last year. The nurses in the SICU have been angels (nice for a change to see health care professionals that actually give a *beep*). They have been working round the clock as a team to moniter Mom and save her life. The hospital just called and her kidney function has improved over night but they are going to dialyse her again today to help her out some. I'll report more lately

Kristina

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Thanks Kristen, I just returned from the hospital after Mom's second dialysis treatment and the good news is her kidneys are doing very well. Her admitting doctor and her cardiologist want to do a catscan this afternoon to see if they find any bleeding because her belly is still quite distended but her surgeon really doesn't feel it is necessary (he's the one I trust out of all the whole lot of them lol) She looks SOOOOO much better, and she even tried to smile today and shrugged her shoulders when I asked if she was feeling a little better. Poor thing, I know she's just miserable and hates all the tubes and whatnot and she was so close to getting out of there Friday but she's hanging in there and getting plenty of rest. Keep your fingers crossed for us and thanks again all

Kristina

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Hang in there Kristina ,you have been through it,I am in a similar situation I have had my mom at my house for over a year and it can be very trying at times,she is aphasic and right side paralysis,Incontinent,But my mom is a wonderful lady,I miss talking to her ,I mean her talking to me I guess.I work full time and have two kids,12 and 7 ,I lucked out getting a caregiver that takes her days off when I am off,and I work every other weekend,most people won't do that,she is only 150 a week and I pay her with moms social security check.she lives in moms house rent free,but just keeps mom from 9-7 pm I work 4 10 hour shifts while I am at work ,I pick mom up on my way home.I will pray for your mom,I hope everything is okay.God Bless you girl,you are an angel.

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Thanks Missy and keep up the good work with your Mom. I just wish I could have mine back home right now. She contracted MRSA (blood infection) while in the hospital after her stroke and now with her immune system pretty well degraded after almost dying Saturday the MRSA has acted up again so last night I had to do the whole gown, gloves, mask thing just to visit her :( The good news is, her kidneys seem to be recupperating well and we have our fingers crossed that her liver does the same. Last night she was a holy terror, fighting her wrist restraint (she's a tube yanker and she yanked out her nose tube earlier). I know when she has any type of infection she acts pretty crazy and I also know they have not been able to give her her Paxil in over 10 days (has to be taken orally and she cannot have anything orally right now) so I'm sure that is why her behavior is so bad. Looking at the bright side, at least she seems to have plenty of energy to fight the restraints. LOL I'm to the point I'm terrified to even go to the hospital and find out what new problem they'll find today sigh...It's like a roller coaster ride with the Marquis de Sade as the operator....

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:( I realize that you have a full plate, but stop being a martyr, and either hire out or arrange it so you can get more help, which will give you more "ME TIME" This could go on for many years more, so please get help before you burn out

June :cheer:

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